Stakeholders' Perceptions of Care Coordination: A Participatory Process

Abstract

Objective: Children with special health care needs or chronic conditions are more likely to have unmet health needs than other children. The purpose of this study was to use a community engagement research strategy to assess the essential elements of care coordination that can serve as the foundation for a system-wide care coordination model for children with special health care needs.

Study design: As part of a summit designed to review the status of pediatric care coordination within the state of Arizona and a call to action, a qualitative descriptive study was conducted to solicit anonymous feedback from 104 stakeholders (family, health care provider, or community entity) on the strengths and areas of improvement in the current system that provides care to Arizona children with special health care needs. Data were analyzed using inductive content analysis.

Results: Five essential categories crucial to building an effective and seamless care coordination model were extracted from the data: Communication, Insurance, Health Care Capacity, Provider Knowledge, and Family Education.

Conclusions: The results from this study can serve as the working foundation to build a system-wide model for pediatric care coordination throughout the state. Providing care coordination services involves many activities across a wide range of organizations and locations. Research that is inclusive of community stakeholders can determine essential components for building a foundation for care coordination.

Keywords: Children; community engagement; special health care needs.